A Woman Who Dared—With ME

It was late afternoon, and I could barely get my body out of bed. In fact, I had been in bed most of the last few days—or was it weeks? Even with all that rest, my legs were still too weak to stand up.

It wasn’t that I lacked the desire to get up or that my limbs couldn’t function. I just didn’t have the cellular energy to power up my muscles. I couldn’t do anything except lie flat. Even that was exhausting.

This state of sheer debilitation was not new to me. And it hadn’t been going on for days or weeks. It had been a decade.

A still from the film Unrest about ME.

On this day, in the spring of 2003, I pushed past the utter exhaustion, even knowing that this exertion would cause my condition to worsen. I was determined. After all, I was being honored with a Women Who Dared award. It was being presented by the Jewish Women’s Archive and Hadassah Boston for my women’s empowerment work. Neither of the organizations honoring me, nor the 300 dinner guests at the award ceremony, knew I did most of that work from my bed.

Should I tell them? I wondered. I had written about my illness in my speech. But would I have the guts to reveal my personal struggle in such a public setting?

The only thing the attendees knew about me was what they could read in the event program: I was a Jewish woman dedicated to social change, in short, to tikkunolam (“repair of the world”). My activism focused on a book I’d written, celebrating the bold and courageous acts of women and girls. I then started a global open mic movement where women from all backgrounds gathered to share their own experiences, telling true tales of daring deeds, and celebrating the chutzpah they needed to fight back against abuse and sexual assault.

What the attendees didn’t know was this: I had ME (Myalgic Encephalomyelitis), a chronic neuro-immune disease that disables between 1 million to 2.5 million Americans and 17 to 20 million people worldwide. The disease is debilitating: it often leaves me too exhausted to do basic tasks, such as cook a meal. It leaves my brain so muddled, I sometimes pause mid-sentence to remember what I’m talking about. Due to my disability, other people lead my women’s empowerment events. I usually can’t even physically get to them.

This lack of research, coupled with negative stereotypes of either the lazy or hysterical woman, has translated to dismissal, stigma, and lack of help and treatment for all people with ME — both men and women. For the past 30 years, the National Institutes of Health (NIH) has pushed ME into the shadows by giving it less than $6 million per year in research funding. In fact, a recent paper shows that ME is severely underfunded by as much as twenty-five-fold, based on its level of disease burden and prevalence compared to other diseases that NIH funds.

Recent hope that the NIH would treat ME with the full seriousness it deserves has fallen flat. Calculations show ME funding went from $6 million last year to $13 million this year––from a biseleh to a bisele (from very little to a little). Even $13 million per year is bupkis (nothing). By comparison, multiple sclerosis, a similar neuro-immune disease with half as many patients as ME, regularly gets almost $100 million per year.

The National Academy of Medicine stated in 2015 that ME is a serious, chronic, complex, systemic disease that often can profoundly affect the lives of patients. They said ME patients are more disabled than other highly disabling diseases, including multiple sclerosis, stroke, diabetes, renal failure, lung disease, heart failure and various cancers.

A striking 90% of people with ME are undiagnosed or misdiagnosed, likely because ME is not taught in medical schools. For decades the guidanceprovided to doctors, including, until only recently, from the CDC, misled doctors on the nature of the disease and stated that exercise would help. In fact, telling an ME patient to exercise is like telling a diabetic to eat sugar.

I made it to the Jewish Women’s Archive and Hadassah Boston event that night in 2003. My legs wobbled as I walked to the podium and my voice shook—not out of fear, but out of sheer exhaustion. That evening, I embraced the sentiment behind my women’s empowerment work; I stepped through my fear to tell the audience members about my disability. They responded with warmth and support.

As my latest tikkumolam effort, I am co-organizing, along with the Massachusetts CFIDS/ME & FM Association, a Boston area event on November 12. UNREST, a Sundance Film Festival and Boston Globe award-winning film by Jennifer Brea, is both a love story and a window into the hidden lives of people with ME. An impressive list of artistic, academic, disability and women’s groups are co-sponsoring our event—including the Massachusetts Department of Public Health.

No cure, no treatments, little research funding and doctors who dismiss patients or recommend treatments that can cause harm: it is understandable patients struggle to hold on to hope. But with this film, and the extensive media attention it is getting, the ME community is coming out of the shadows and into the light. As a Jewish woman who dares, I’m committed to doing my part to help.

Comments

Thank you for writing this, Rivka, and thank you to Ms. for printing it. The time is perfect for people to speak out, see the documentary Unrest, read articles like this, and to read about the history, politics and medicine of ME and CFS in our recently published book Lighting Up a Hidden World: CFS and ME available online. These works support each other and those with our illness. All of these advocacy efforts really do bring ME/CFS into the limelight. Keep up the good work, everyone. It is sorely needed as many of us have been waiting decades for this to be seen and heard.